Happy New Year!!  I hope this post finds you all recovering from the holidays and settling back into a comfortable routine.  2012… can you believe it?!?  Wow!  It feels like just yesterday we were all consumed with Y2K.  Fast forward 12 years & now we’re told a cosmic event will bring about the end of the world.  A collision with a black hole perhaps?  As if we don’t all have enough other things to worry about!!  The simple truth, though, is that this year just might mark the end of the world… for any one of us.  Not a cosmic event, but an accident perhaps or an illness.  It is truly amazing how life can change in a split second.  The only thing I know for sure is that you can never go back.  Time marches in only one direction – forward.  I can assure you that, should something happen to yourself or a loved one this year, you would give anything in your power to turn back time, and I can also assure you this - it will not happen.  Just another reminder to appreciate every day… slow down, take in the sights, the sounds, the smells – memorize them.  Never pass up an opportunity to say “I love you” or “I appreciate you”.  And please, don’t sweat the small stuff!

We had a fabulous holiday season… hospital free!!  It was the first time that’s happened since the year Emerson was born, 5 years ago.  Christmas day?  Not so great.  I had the stomach flu.  The season though?  As good as it gets.  And Emerson?  Good, really good.  So good, in fact, that Jim & I seized the rare opportunity and swept the family out of town for a few days the week before Christmas.  Where to you ask?  Only the happiest place on earth (a perfect fit for one of the happiest families on earth) – Disneyland!  It was so much fun!!  We didn’t tell the kids until the day before we left.  It was a hard secret to keep but paid off in their unbelievable excitement!  We decided to make the trip a Christmas present & I thought it best be a surprise, as all good Christmas gifts are. 

The most exciting surprise, though, was yet to come… On our second day at the Disneyland Hotel I had an unexpected call from the Guest Services Manager.  “Mrs. White?”… “Yes”, I replied… “I understand you booked a Disneyland Adventure tour with us on Thursday”… “Yes we did”, I responded, a bit curious as to the nature of the call… “Well, there is a gentleman who was looking over the reservations and recognized your daughter’s name”… “Okay…?”, I said… “He reads your blog and has followed your story for many years.  He called to tell us about your family and asked if there was anything special we could do for you”… Insert long pause… “First off, if it’s not too inconvenient for you to re-pack your bags, we’d like to move you to a new room for the remainder of your stay”… “We’d also like to provide you with access to our concierge lounge where you can enjoy a private viewing of the nightly firework displays”… “And, we understand your daughter likes the princesses?”… “Yes she does”, I managed to muster… “We’d like to arrange for a private meet and greet, who is her favorite?”  I softly replied in utter disbelief, “Belle or Snow White”…  “We’ll do our best”, she answered as she politely ended the call with a promise to get back to me with more details soon.  Insert blank stare… pinch me, was I dreaming??

What happened from there played out like a movie on the silver screen – stuff only scriptwriters could think up.  The new room was not any old room… nope… it was the Mickey Mouse Penthouse Suite (think celebrity accommodations).  I can’t even begin to do justice to the look on the kids’ faces when they opened the door.  There was a full size Christmas tree, a huge gift basket for Emerson, & Mickey Mouses (or would that be Mickey Mice) everywhere!!  A Disney paradise… truly unbelievable! 

And the character meet & greet?  Wow!  Luckily we’d packed Emerson’s Belle dress!!  They were even able to squeeze her in for an appointment at the Bibbidi Bobbidi Boutique where they transformed my little princess into a real life, Disney princess right before my eyes.  We arrived at the castle door in prompt fashion as all proper princesses do, unaware of who would be meeting us on the other side.  I silently hoped for Belle or Snow White, afraid Emerson might be a little less impressed by one of the others.  The door opened &… drum roll… it was Belle!!  Phew!!  Princess Belle met Princess Belle – it was perfect.  Little did I know there were even more surprises yet to come…

Belle and Belle (aka Emerson) admired each other’s hair & dresses, they kissed & hugged… then Belle announced that a few of her friends had come to visit.  The door opened & one by one EVERY SINGLE Disney princess walked into the room.  Aurora, Ariel, Snow White, Tiana, Jasmine… Oh. My. Gosh!!  The look on Emerson’s face?  Sheer, utter amazement!!  Priceless!!  To see this little girl who’s fought through so much just to stay alive, who 2 years ago laid lifeless in a medically induced coma… a little girl who by all accounts should have died many times over, experience so much wonder and so much joy… Wow, there honestly are no words.  Jim and I couldn’t even look at each other, both of us fighting back the tears.  I’m crying just writing about it!!  It was unbelievable… the stuff fairytales are made of!

And if all that wasn't enough, we received a call from our good friends at COTA that an anonymous donor had made a contribution to Emerson's account for our family to use as we saw fit.  We divided it in 3 & let the kids spend their portion at the park.  They were thrilled!!

The whole week was just amazing… experiences money can’t buy.  No one gets a private audience with all the princesses.  There are no shows or rides that promise it, no excursions that offer it.  It doesn’t matter who you are… it just doesn’t happen.  But it did, for Emerson.  Wow!  Needless to say I have extraordinary gratitude for everyone involved.  Most especially, though, I am so thankful for the gentleman who reads this blog and initiated this string of magic.  I don’t know his name, but I hope he reads these words… Thank You!  To the Guest Services Manager who helped to coordinate it all…  Thank You!  To the anonymous donor... Thank You!  Together you have given us the most precious gift of all – memories.  Amazing memories!!  I can assure you that when we look back on Emerson’s life this will be a highlight, one of the best!  From the bottom of my heart… the words seem inadequate, yet they are the only ones I know… Thank You!!

What a Christmas!!  Collin brought back a nasty souvenir from California – the stomach flu – and shared it with all of us.  Uggh!!  With that one small exception, though, Christmas was perfect!

As for New Years, it was pretty low key for us this year.  It did bring with it a lot of reflection and thought though.  Did you make a New Years resolution?  Please share.  I generally do, although I always abandon the “typical” workout & lose weight one for something that might actually happen.  Oddly enough, before our trip to Disneyland I’d considered scaling back the blog this year… what happened in California, though, was a not so subtle reminder of how amazing our readers are (ALL of you) & how much I’ve come to rely on and appreciate each of you.  You’ve been by my side through the worst of times & you’ve rejoiced with me through the best.  You’ve cried with me and laughed with me, you’ve mourned with me and celebrated with me.  You have enriched my life and this journey in ways you’ll never know.  I just can’t imagine how I would have gotten through the past 4 years without you!!  As such, my first New Year’s resolution is to update the blog at least once a week… I can’t promise a well composed, thoughtful entry each time, but I do promise (at very least) to give you a quick update on Emerson.  Admittedly I’ve already sort of failed that resolution as it’s January 11th and this is my first entry for the year… I promise from here forward, though, you’ll hear from me more often!!

My second resolution, and this is a bold one, is to take care of me.  It’s been a long time coming & the time is now.  There are a million reasons not to do so – I have a terminally ill child, my boys need me, my marriage needs attention (as do they all)… a lot of things broke over the past 4-5 years & there is lot’s to repair.  I just can’t be good for anyone else, though, if I don’t first take care of me.  You’ve heard it many times before & surely you know it to be true, do you ever really take the time to care for yourself though?  Most of us don’t.  I finally came to realize the only person responsible for me & my life is ME.  I can blame everyone else for why I don’t do anything… I can give you a million (good) reasons why there’s always something more important to do… 10 years from now, though, the only person who will have paid the price is me.  I refuse to be a martyr at the expense of living my life & accomplishing my dreams.  Yes I dream for healthy children and a life with my daughter and a strong marriage… I need more though.  I can’t help but feel I’ve lost a lot of myself since Emerson has been born.  I know I’ve played an important role in her life & I know my contributions have been valuable, but sitting in a hospital on my back side for 4 years has me feeling as if life is slipping by with little to show for it.  So, after much soul searching I’ve decided to go back to school to pursue a degree in Pharmacy.  My former degree is in Economics so I have about a year and a half of pre-reqs to complete before I can apply to Pharm School.  I’ll be taking classes at UCCS (University of Colorado Colorado Springs).  Spring semester starts next week & I’m kicking it all off with Calculus, Chemistry, & Anthropology.  Upon completion of the pre-reqs I hope to attend the University of Colorado in Denver for a 4-year pharmacy program.  My current plan is to do pharmaceutical research or, alternatively, hospital pharmacy.  I’m very interested, at this time, in exploring alternative methods of administration for traditional IV antibiotics. 

On top of all that, I’m training to be on the speaker circuit for Donor Alliance & am preparing to begin volunteer work for a pharmacy in town that ministers to those unable to afford their medications elsewhere.  It’s a lot but I have to say – I’m really excited.  I look forward to the challenge & feel blessed to have found my passion and to have the support to pursue it.  I can say with all my heart this feels more “right” than anything I’ve done in a long time!

Clearly we have help with Emerson (for me to consider such an undertaking) & indeed we do – she now has 1 full time and 2 part time nurses that are with her Monday through Friday.  It’s been a blessing beyond measure!!  They are wonderful, caring women who love my little girl and are committed to keeping her healthy and at home.  I’ve come to know and trust each of them implicitly and for the first time in maybe her whole life, I can finally just be her mom (for at least 5 days a week).  It’s exactly what we all needed!

You may recall several months ago I’d all but thrown in the towel… I didn’t want to volunteer for Donate Life… I didn’t want talk about organ donation… I couldn’t get far enough away from any of it.  Those emotions were real and resurface still every now & again.  At the end of the day, though, I’ve always said there is good to come from the life Emerson's lived.  And it won’t happen arbitrarily.  It will happen because I choose to make it happen.  It will happen because I choose to bring about something that will impact others & ultimately leave the world a better place.  Maybe I’ve partly accomplished that by sharing her story here or maybe I’ll uncover something as a Pharmacist that will spare others some of the pain she’s endured.  Maybe it will be a combination of many different things.  Whatever it is, though, I am committed to see it through.  It is the only possible way to make sense of this seemingly otherwise senseless journey.       

So, my question to you today is this… are you waking up everyday just going through the motions of life or are you really living your days?  Does what you are doing feel “right”?  If not, join with me this New Year in finding your path/passion in life & pursuing it.  No one else will do it for you – you have to do it for yourself.  Life is passing by & now is your time to seize it!!

Prayers for peace, health, and prosperity in the New Year!   

P.S. – There are pictures to follow, I promise… I’m off to a hockey game now though.  Go Rampage!!